Thursday, February 24, 2011

The Journey Begins

This is the story of a precious little girl named Ella. She was born on March 16, 2010. The delivery was normal and so was the recovery. What was not was her newborn hearing screening. She failed. I wasn't too worried because the screener didn't sound worried. She said we would have to come back to the hospital in a couple of days to have another test. We went back and the tympanogram was flat (fluid in ear) and she failed again. Again I wasn't worried. Why? I don't know. Maybe I thought it was just the fluid that was making her fail. We went to see an audiologist and the tympanogram was still flat so they could not do the (ABR) test. We went then to see an ENT. She did another tympanogram and saw that it was flat and gave Ella a low-dose antibiotic to take for a month. We came back in a month and she said the tympanogram was fine and there was no fluid. About a week or two later we went back to see the audiologist and again the tympanogram was flat. She was too old to run another ABR so we started in the booth. It came back that she did have a possible hearing problem. We were referred to Children's Hospital for a sedated ABR. She showed up to Children's Hospital on January 27th and Ella was sedated. They did the ABR and a bone conduction test. The results were that she has a profound bilateral sensorineural hearing loss. In layman's terms she is deaf. It was a shock to me. A few months before the booth test I started noticing that Ella wouldn't look up when I called and wouldn't respond when I made noise to get her after her nap. But I wasn't  ready for this. I haven't made my peace with it yet. It is still a struggle for me to really think about. It has been about a month since we have found out and a lot has changed since then. My relationship with my daughter has changed. My expectations and concerns for her future have changed. I am really hopeful and confident that she will have a great and relatively normal life.

We were referred to UCLA because they were only one of two places in Southern California that do cochlear implants. With her hearing loss being so profound she will have to have implants. We went to see the audiologist, Dr. Kim, on the 11th. She first did a test of Ella's hearing and she concurred with Children's that she had such a profound hearing loss. Next step she said was to get hearing aids. When they do cochlear implants, there has to be at least a 3 month hearing aid trial before the implants are put in. So we made molds of her ear and part of her canal for the hearing aids. Tomorrow she will be getting them. They said we could pick out the colors and we got her purple ones. They are going to mostly rely on what I tell them about her hearing aids as far as her hearing with them. 

We were also referred to the John Tracy Clinic. This place is wonderful. The made me feel not as overwhelmed with everything. They are a place for parents of children that are deaf or hard of hearing. They have parent classes, preschool classes and one-on-one classes. Tuesday night we went to one of the parent classes. It was very eye-opening and informative. They had a panel of kids that go to the JTC and their ages ranged from 5 to 12 years old. I was amazed at how well they spoke and interacted with other people. If I didn't know better I would have thought that they could hear and were "normal" kids. During the class we got to ask the kids and their parents questions. All the kids except one had cochlear implants. I really enjoyed hearing their experiences. It is making me change my outlook on this whole process and now I can see that there is a light at the end of the tunnel. I know it will be a struggle some times but it will all be okay. Ella will be okay.


  1. (((HUGS))) You know you have our thoughts and prayers.

  2. ok i have a lot say about Ella's story and his journey was similar to our Lucas's so I know exactly what you are feeling and hope that you know you are NOT alone. You are blessed to have the adequate staff in SoCal and best of all, you have JTC. I love JTC and i rave about them every chance I get. I look forward to more posts and getting to know more about you and Ella. Best wishes.